Wednesday, June 3, 2009

Sometimes You Only Have Strength for a Quickie

Wow, I am BEAT. I am so tired I can barely even sit up to write at the computer. All I wanna do is go lay on the king bed and turn on the TV and fall asleep to the sounds of Rich Eisen telling me everything I missed over the past 36 hours in the world of the NFL.

But I know there are some people depending on this very blog for updates because A)I don't have time to call people and B)my Blackberry is a power hog and I zap out the charge pretty fast.

Anyway, this is gonna be the short update kind of stuff. The in-depth Lilly-esque over-analysis and feeble attempts at humor will be later.

Some quick notes:

1. Bennett is at the hospital having the EEG. He is frustrated but OK. Had some nice seizures for the test so far, good data. We've done this before, the PET scan is tomorrow.

2. Having the grandparents here has been about as helpful as it gets.

3. Elaine and Brandon Coleman are two of the most impressive human beings I have met in a long time. Their daughter Sophie is PRECIOUS in person. I have a lot to write about meeting the Coleman's, but want to do it when I can do it justice.

4. Staff at Children's Hospital of Michigan are uncanny. And I mean that in a good way. Much more on that later.

5. I'm fine being in the middle class. Some of the stuff in this swank hotel room we got a sick deal on I can't even figure out how to make it work, it's way too much for the rich folk. But the room service was fuggin' TASTY. Though I was seriously craving some Mexican tonight...wish that had been on the menu.

6. Richard...you...really shouldn't have, but thanks. It was a terrific surprise.

7. The casino I have to walk through on the way to the parking garage in the hotel is a swirling mass of ciggie stink. I can't believe I used to puff away on that shit.

That's all I got. Had little sleep last night, will get maybe a few hours tonight, and back to the hospital in the morning early to transfer Bennett out of a room and into outpatient PET scan area. Hopefully will have some time tomorrow to write, but also have to try to hit some work stuff too.

But you know me, I'll have full-fledged explosive Blogarrhea when I actually recap the whole trip after it is said and done.

And in case anybody is wondering, despite Jen telling me to come back here for the night and her decision to have her and her Mom take the night shift, I am holding it together really well, just like I hoped. I got teary eyed twice, and once it wasn't even over Bennett. First one was, cause I just hate seeing his face when leads get put on for EEG. Sucks. Second was some misty eyes over how happy Brandon and Elaine were. When they left after their visit I just thought...wow, what an amazing journey they have been on...

Anyway, I am beat, gotta hit it. Super tired.

Much more to come.

Thanks to all for the messages so far, will get back to all of them.

7 comments:

  1. So glad to hear that the staff is super! We got our appointment times today for mid-July, but unless Keppra all of a sudden becomes a raving success, we will be starting ACTH and have to postpone our visit.

    That is cool you got to meet Sophie's parents. All of the good things that come out of visits to Dr. Chugani.....it is truly amazing. Hoping that your visit gives you all the answers you need and a way forward to " fix your boy"!

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  2. I was SO thankful to read your blog this AM.....It sounds like things could not be going better....

    Y'all are where you need to be...It is SO obvious....

    You hang in there and stay strong....You will FINALLY get real news soon...

    As my wise mother always says in these situations..."It won't be as long as it has been!!!"

    Cyndi

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  3. Glad to get the updates...all is well here. Carter had some wild and loud fun with the Layton cousins last night. He's been taking naps at school and getting great reports. We're going to Aunt Jane and Uncle Dean's tonight for dinner and to run around. I'm sure Jen is filling you in but there it is just in case. He's excited to see you guys tomorrow but hasn't cried at all. Kiss Bennett for me!!

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  4. thanks for the update! Glad to hear that the trip is going as well as a trip to the hospital can. give your little guy hugs from all of us. hang in there!!
    ....monica

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  5. I am looking forward to you getting the chance to fire your questions at Yoda! "There is no try."
    (Wanted to do "something." I feel as helpless a little girl.)

    Stick in there.

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  6. Hey, a "quickie" update is better than no update!
    Glad to hear it's going okay so far. After the PET scan tomorrow he'll probably be just as wiped out as you are. We went straight back to the hotel afterwards, took a LONG nap, and ordered room service and didn't emerge 'til the next morning!
    They will take very good care of Bennett down in the PET dept.

    Hang in there!

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  7. Thanks for the updates Ken, and you have no idea how much they are helping ME! Can you believe that? You're the one in hell, and I'm thinking how much your updates are helping me. Maybe one day I'll be able to tell you how much, and how much I REALLY want Bennett to get better, and for all this to be behind you guys.

    Someone needs to make an action figure called Super-Dad, and give it to you; of course he'll come with his partner Super-Mom.

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